Agenda 3: Updated gap analysis on pædiatric HIV treatment, care and support
By Laurel Sprague
The NGO Delegation expresses sincere appreciation to UNAIDS for the efforts taken over the last years to support and motivate the HIV response for children.
Some members of the board might remember that a report was provided to the PCB in 2014 describing a heartbreaking prevention and treatment gap between the number of children needing HIV treatment and the amount of treatment available for them. (Get numbers from report). At that time, I shared a few words about my own experience in the hopes of encouraging greater urgency among countries and donors to ensure that women in lower income countries have the same access as those in countries like mine to decent antenatal care, HIV prevention, and HIV diagnostics for early identification of HIV status when they have children. Angeline spoke of the emotional torment from not knowing her sons’ HIV status…I know this torment…there are other women in this room..a few of us…who know this torment.
The progress in improving access to pediatric diagnostics and treatment is progress that not only keeps women and their children alive, it also protects stronger family bonds, emotional support, mental health, and reduces at least one source of trauma in the lives of women and children living with HIV.
The Decision Points that the PCB adopted in 2014 were initially developed by the NGO Delegation in collaboration with our civil society colleagues and negotiated together with every member of the PCB to ensure that we had provided guidance to the Joint Programme that reflected the needs of children across all of our regions. We called, in particular, for involvement of children living with HIV, the inclusion of their voices, in the programmes and studies that affect them, including related to the HIV-related stigma and discrimination that they face. In my intervention at the time, I noted that there is no one in the world more likely to be spoken for, than listened to, than children. We ask that attention to the GIPA principle include attention to children, adolescents, and young people living with HIV from all of our communities.
The focus on stigma and discrimination faced by children and young people is much appreciated and we look forward to further steps in this direction. It is dismaying, however, that, even in the context of the decision points for this report, we cannot move away from stigmatizing terms like “Mother to Child” transmission. The NGO Delegation has been in many conversations with other PCB members and we do understand that those who choose to maintain this language do not generally wish to further stigmatise women living with HIV. However, women living with HIV have been calling for many years to change this terminology to language that does not point a finger of blame at women living with HIV, for the language that we use to be that of “vertical transmission.” We have noted repeatedly in multiple venues, with too little success, that there is no other process of HIV transmission that names a person as the source of HIV acquisition. Certainly, we know in our bodies that no one wants their baby to be born fully healthy than the mother who is carrying that child. So why would we work within stigmatizing frameworks that say again and again: if your child is HIV-positive, it is your fault, you are to blame? The NGO Delegation has conceded that we do not have enough support now to change the terminology in the Decision POint from “mother to child” to “vertical” transmission but we wish to say publicly that we strongly oppose this terminology.
We offer our appreciation to Brazil, Uganda, and Chile, and UNICEF for using the non- stigmatizing language of “vertical transmission” in their remarks today. We also note with appreciation the adoption by UNAIDS of the language of “vertical transmission” in the 2016-2021 Strategy.